Heart leak.

Sometimes, moms hearts leak. That’s right, I said that. They freaking leak.

As parents, we do our best. We work hard, we change sheets, wipe butts and kiss boo boo’s. We do these things and we hope for the best. The best albeit is relatively different for everyone, naturally this, among other things define our parental identity.

We have an identity outside of parenthood too though. We’re employees, sisters, wives, friends… we have dreams and desires. We have ideas and what if moments. If we’re lucky enough, all of this exists together in a harmonious balance. But, sometimes stuff goes wrong. Then, we grip to what we need and we again hope for the best. We pray for what we can’t control and when we can we extend our hands to help others.

Grief can trigger that. That need to join hands. The need to slow down and appreciate everything you have and everyone in your life.

Our beautiful 4-year old boy, Cooper, had an MRI last week. His second one since we learned he has NF1, (Neurofibromatosis Type 1.) We learned he had NF1 when he was still just a baby. We knew this disease was something he would have his whole life and that we would have to watch for concerns.

There are essentially two approaches you can take to caring for NF1. You can live your life and ‘hope for the best’ go to the doctor like you or I would if there are fevers, falls, and/or other concerns.

Or you can do occasional MRI scans to watch for areas of concern. Since it’s been almost 3 years since our last scan, our geneticist recommended we do another scan to compare to the data on his first scan when he was just a baby.

I’ve been impatiently waiting for his geneticist to call me back all week and today, she finally called.

I was at the lake. I took today off to float in the beautiful lake and take in as many sun rays as possible before the college students return, footballs are flying and the midwest fall sets in. My phone rang.

She told me there are no visible gliomas. That’s good, I think. But when comparing the data to his first scan there is increased T2 signal within the cerebellar white matter prominent in the basal ganglia.

Friends, I do not know my brain terms. This is gibberish to me.

Essentially she’s referring him to a Pediatric Neurologist in Minneapolis. She said he may request that Cooper have an MRI every 6-months rather than every year or two. She also said she has some concern about the increased white matter entering into his brain.

Let me tell you… Nothing makes my heart want to leak more than the thought of something happening to one of my little people. We all cope with difficult news differently. As many of you know, I’m also a mom to a special little boy with Williams Syndrome. Doctors appointments, scans and trips to Minneapolis are nothing new to us. But we also, naturally, felt like now we did that… and now we shouldn’t have to anymore. I mean that makes sense to me?! That’s fair right? But life’s not fair, life’s a circus. I tell my kids that all the time. So why shouldn’t it apply to everyone?

This is a setback. It’s not the results I wanted. I know it’s not what my husband wanted. But we still don’t know anything more either. We know there is an increased T2 signal and increased white matter leading into his brain. Whatever that means. What I know for sure though is that our special little man is strong, determined, so-so funny, beautiful and amazingly sweet and imaginative. I’m so lucky to be his mom. He blesses our lives everyday and I will continue to clean his chubby cheeks and say our bedtime prayers each night. Tonight, a few extra prayers for his health are in order.

Getting ready for his MRI with Buzz Lightyear.

xoxo

1MinnesotaMom

4 thoughts

  1. Hello momma ❤️ I know all too well what it feels like to receive those terrible news and feel your heart sink to the bottom of your stomach. I, too, have a 19 month old son with Williams Syndrome who has had plenty of the medical issues associated with the genetic deletion including 2 open heart surgeries. We have grown accustomed to the weekly therapies, the monthly specialty doctor visits and the never ending lab draws. You’re always looking for the end but you never quite get to the end of the tunnel. We have learned that it gets easier when you have a village that stands by your side through thick and thin and we are forever grateful for that. Many hugs and prayers to you and your children 💙💚 I look forward to following your blog and including you in our village. Hang in there momma!

    Like

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